Kelly’s Story

“My name is Kelly, and I have CIDP.”

This may sound like an introduction at an AA meeting, but I wasn’t battling an addiction — my body was battling me. Similar to an addiction, I felt I had very little control. For years I’d been figuratively locked away, completely dependent on forearm braces and my wheelchair to get around the house. In a span of three years, I’d only left my home five times, mostly for doctor’s visits. I was completely devastated by the need for this metal device with wheels. I used to run 30 miles a week, I never sat down until well after dinner was cooked and served, and I was the organizing member of my larger family. But things went downhill very quickly for me.

It’s easy to look at people in wheelchairs and feel a moment of sympathy, but that moment passes for you while we’re still in the chair. It was horrible for me. As my anxiety increased, I continued to isolate myself. I had severe pain and I was on ridiculous doses of narcotics, which only served to ‘lock me inside’ my own head even more. After a couple of years, I began having very bad thought patterns; my depression became severe, and I kept thinking it would be easier not to be here.

Thankfully, I shared these thoughts with my wonderfully supportive husband, and he had me in front of a therapist the next week. Betsy pulled me out of the pit I’d fallen into, and she gave me my internal fortitude back. I wasn’t going to run six miles, but I was on a mission to have a better life. I wasn’t quite sure what that meant, but I knew it was going to be better than those days I was simply ‘existing.’

My journey to regain strength:

I tried a number of natural or homeopathic regimens before asking my neurologist for a physical therapy referral. I’d had this disease since 1994, but no one had ever recommended I try physical therapy. The first therapist had me working with lightweight bands, but after doing this religiously for six weeks, I was in insurmountable pain. Even my accessory muscles — the only muscle group that had been working — were taxed beyond usability. My nerves were aggravated to the point that it took several months to get them back to their former condition.

A few months later, I had a severe flare with extreme pain affecting my right leg. It was the worst flare since the first one I’d had back in 1994. The pain was unrelenting, and nothing seemed to help. Fortunately, someone recommended I try acupuncture, and God bless that recommendation because it was the only
treatment that gave me any relief. The positive results of my acupuncture encouraged me to seek out another ‘alternative’ physical therapist. I knew there must be a way for me to help the muscles that were healthy so I could use them correctly. Maybe I wouldn’t be able to get the muscles back where my nerves had died, but I wasn’t going to settle for a wheelchair. The next physical therapist I visited had me using balls and bands — bands again! I refused several exercises, stating past disasters. In lieu of these methods, they gave me a guide to general stretching and some exercises using only gravity. I did restorative yoga for people who have disabilities, and while it was helpful for the mind, it did little to improve my physical ability.

I had severe psychosocial issues living where I was (close to my family), so my husband and I decided to return to Maryland, where we had lived earlier in our marriage. Once we moved back, the stresses of the family were gone I was able to work on myself, and only myself. Our goal as a couple was to get me healthy in both mind and body. I started by going off of the Fentanyl patch I’d been using for eleven years, and I was amazed at how much clearer my head became. I was on a mission more than ever, and once again I found myself looking for a physical therapist — but this time, I was in search of a rehabilitation-type of the physician. I learned they only treated patients in rehab hospitals, and thankfully I wasn’t bad enough to be seen by any of them. It was then a friend passed along a name to me: Brad Grohovsky.